I expected full term pregnancy to have lasting effects as a woman’s body goes through a tremendous amount of transformation. One effect I was not expecting was my almost total reliance upon the scooter to get me around. At first I justified the scooter as I progressed further in my pregnancy out of fear of falling and injuring myself and my baby. But after he was born, I realized I had developed a physical and probably emotional attachment to my household wheels. What I soon realized was that the scooter which I had purchased to assist me when I needed it had taken the place of my legs. The brain is survival of the fittest. The networks used previously for walking were being stolen by the few parts I was using. I felt the effects of this when I tried to walk even a few steps, changed position in bed, or tried to get off the floor when I was playing with Aaron. It was traumatizing watching my body deteriorate before my eyes.

I tried many PT clinics, but found limited success. Most did not have specialized equipment that helped people with spinal injury (and as you read below it makes all of the difference in the world). I contacted specialized spinal centers, but was surprised to learn that they were not comfortable treating progressive diseases like MS and Parkinson’s. We are not easy patients to treat because our baseline is a moving target. As an active, high energy person, I found myself resorting to bed more than I would like to admit. Everyday was a struggle and my friends and family began to notice. My search continued until I met Patti. We parked side by side in the handicapped spots at work. Our wheelchair paths crossed and I asked her how she got around so well in her chair? She told me about the Kennedy Krieger Institute in Baltimore and the amazing success she had there because they are an International Spinal Center. Needless to say, I made an appointment asap.

After the most thorough neurological exam I can say I have Ever had, the neurologist recommended an intense rehab program that would last 4 hours 3 times a week. With MS dictating how my days go, I could not fathom how I would be able to handle such an intense program. However, I lost my ability to understand my physical limits by resorting to a wheelchair. I had no stamina and a fear of falling that stopped me from trying to figure it out. I could not figure how I was going to drive an hour to PT, go through 4 hours of grueling rehab, and then drive an hour home- with my baby in tow no less. I spent weeks trying to figure out if I should reach out to family and friends for help, but couldn’t imagine asking anyone to spend 6 hours of their day, 3 days a week to do this. Finally, I thought I could have a babysitter accompany me and watch Aaron while I worked. While I couldn’t imagine how this was going to work with my little guy spending endless hours in a hospital, I was excited to learn that Kennedy Krieger was a pediatric facility catering to children with play stations in every nook and cranny. What a relief! He ended up enjoying his days there interacting with other children and exploring the therapeutic gardens.

When I entered rehab, I was in awe of the equipment. It was like nothing I had ever scene before. They use Functional Electrical Stimulation (FES) that applies small electrical pulses to paralyzed muscles to restore function. Before therapy, I could not push my legs enough to pedal a bike- one of my last ways to exercise. After using the FES bike, my legs could actually push the bike on their own. The FES bike starts out doing the work for my legs, then it stops as my legs start to do the work. They also have a treadmill that holds my weight so that my legs could be moved along so they could get some nerves firing.

My improvements were so awesome the first few weeks. I started walking 48 ft only with a walker. After a few weeks, I could walk 459 feet with a single crutch. With a target of 20% improvement, we were all astounded by my 459 foot aided walk. We were getting used to the hour drive in the morning and Aaron was loving his time there in the playroom and interacting with the therapists. However, out of nowhere, I woke up one morning and could not move. I was devastated. This is the problem with an unstable progressive illness- they are unpredictable. I hoped this would be only a day setback. It was not. I spent a week in my bed with Aaron hanging out beside me. His little smile helped me keep my chin up while he played with my chair like it was a toy car.

After a week, I headed back to Kennedy Krieger. Needless to say, I was weak and had lost a lot of the gains that we had achieved. My PT was not worried and we moved ahead. I resumed training and worked to get back to my previous levels.

One aspect of the therapy that I found very beneficial was working with an Occupational Therapist. She helped me figure out ways to make everyday life easier. This helped me be a better mommy. Everyday activities such as getting Aaron into and out of a car seat were very difficult. My OT worked with me on the actual car seat to figure out how I could get my hands around the buttons to pull him in and out easily. We also took a walker and added a booster seat to it so that I could take Aaron from his crib to his changing table easily. They taught me how to bounce him on a ball so I could do some kind of physical activity with him since I could not lift him. They devised an apparatus to strengthen muscles which gave me support while crawling on the floor with Aaron. Such simple activities brought me so many smiles because I was being empowered to be a stronger mother.

While I continued to be weaker for reasons unknown, we were making great progress. Of course, things could not be all smooth! Driving on Interstate 83 en route to Kennedy Krieger, my wheelchair van decided to die. I could not imagine how we were going to transfer me in a wheelchair, Aaron in a baby seat and our helper. But without missing a beat, dad flew to the rescue solving Operation Van Rescue by scooting me along the side of 83 without getting flattened like a pancake:

As our adventures continued, I realized that I was active and on my feet 3 to 4 hours a day! I learned how many feet I could walk without collapsing and it was more than I ever thought I could walk with crutches. I was vertical and while my gait was not pretty, it’s a start. I achieved more than I could fathom and I am on the road to recovery thanks to my awesome team at Kennedy Krieger.

15 Comments

So glad that you found this new place. They sound great. I love you more than anything, and would take your place in a second. Stay connected with all the wonderful church people you know. Together they have much power. I love you, Mom

Debbie,
You are an awesome young lady. Love to hear you are making progress with your condition. I truly believe in the power of mind over body and you are a living example. I pray that you continue to have courage and strength to conquer this battle. You are still just as gorgeous as ever and Aaron is a handsome little man. Thinking of you and hope you are doing well.

Deb,
You are a beautiful person and a prolific writer. I recommend your blog to many people hoping that your magical resilience, vitality and persistence will rub off on them. Aaron is beautiful and a joy to watch. With love…